June 11, 2011

Everything seems to have a price

Sadly, things quickly took an unexpected turn after my last "life isn't so bad with a g-tube post". It's been a rough couple of weeks trying to keep her "button" area healthy. We noticed that she had some extra red/fleshy skin growing around it and we were immediately concerned. We brought it up to the GI Dr. nurse and she brushed it off as normal and just something that happens when you have a G-tube. Because it was small and didn't seem to bother her at first I was accepting of that answer. However, it quickly grew in size and then started to bleed. I decided to reach out to the Surgeon's nurse and thankfully she was very responsive. I spoke with her on Wednesday May 25th and she arranged for Annabelle to be seen the following Friday, May 27th.

This is what they saw when we arrived. It's called granulation tissue and it's gross!

They were very happy that I called them and that I didn't just accept that "this just happens". Yes, it's common and it does happen but they always try to take care of it and minimize it's growth. The treatment plan has been cauterization (done there at the hospital outpatient office) and the application of a steroid cream 3 times a day. Thankfully, the cauterization was not as bad as I has expected. She cried a little but only because the nurse and I had to hold her arms and legs down. She did not seem to be in any pain. I'll admit I was a bit shook up from the whole experience.

Disappointingly, we had to return to see the surgeon the following week because the granulation tissue grew back. Here she is waiting to get her belly checked out by the surgeon on Friday June 3rd. I was feeling nervous and worried since this was the second week in a row that the granulation tissue had grown back after being cauterized. She on the other hand was happy as can be and loved saying "cheese" for her picture.

After this appointment where they once again cauterized all they yucky tissue that was growing the surgeon gave me four sticks covered with silver nitrate and instructed me that he wanted me (yes, me!) to cauterize any new tissue that grows during the next week. Oh my, talk about stressful, but I did it. It wasn't fun and I was so very nervous but it seemed to do the trick - for now at least. When we returned again on Friday, June 10th the Dr. did not need to do any cauterizing, which was a blessing. He said it looked good. There is however, a significant amount of skin irritation / breakdown that needs to be taken care of. So now we have a few more steps in the daily "process". He is having us put Bacitracin ointment around the button (which right now is the considered the "wound") and then cover it with a mesh like, sterile, non-adhering protective dressing called Xeroform. We then cover that with a dry gauze to help keep it all in. We will return again next Friday for a follow up.

It is wrong of me to say (or shout) I DO NOT WANT TO STEP FOOT IN THAT HOSPITAL AGAIN FOR A REALLY LONG TIME!! I'm just over it! Are any of you thinking what I am thinking? Enough is enough!!! I know it really isn't that big of a deal but it is ONE MORE THING! I hate to complain and I try not to but seriously this kind of sucks. Her poor skin is so red and it just seems to be getting more irritated. I think the problem is that she is a belly crawler and as she crawls she continually irritates the button. I don't really know how that can be addressed - she needs to be able to get around. I think it's fair to point out that Annabelle does not seem to be bothered at all by the button, by the leaking (which I didn't even address in this post), by the skin irritation, etc..... Thankfully, these really are my concerns, not hers. She actually seems happier than ever.

I guess that last line says it all - she seems happier than ever! There really is no question that she is stronger than before she got her G-tube. One example is how she is now consistently getting up on her knees and is climbing up to things. She is almost able to pull herself all the way. She doesn't crawl (yet) in this position, she just puts herself in it and screams really loudly (no joke) the words "KNEES!!!" She wants everyone to know what she is doing and then she claps for herself. She's not shy - she's my daughter :-)



She is also very much enjoying practicing on her parallel bars that we have set up outside.


Here she is walking at her parallel bars - Saturday, June 11th


She is also tolerating her 1 1/2 hours of PT & OT 3 days a week. She is making noticeable progress. Here she is walking with her walker at PT earlier in the week.


I guess it's pretty obvious to say that the positives far outweigh the negatives and that is truly what I need to focus on, but I'm human and that's hard to do some times. I know this experience of Annabelle having a G-tube button is not going to be easy but we all know that most things in life that are worth having aren't easy. Annabelle's health, growth and development is what matters the most and her button IS helping with all of those areas of her life!

By the way, our sweet girl is up 3 pounds!! She now weighs 20 pounds. Yep, those adorable little legs of hers are getting chunky!

There's NO question our girl is LOVING life. She is not feeling sad about her "extras" so I need to snap out of it and fast.

I wonder if Branden is strong enough to throw me up in the air like that? I wonder if I'd love it as much as she did?

Annabelle - I love and admire your zest for life. I hope it never fades.

10 comments:

  1. Nicole, we went through the granulation tissue issue with Evan too, although they used silver nitrate the first time and the steroid cream and that worked. I know at times it can be frustrating. My woe is me time comes in the evening preparing the feeds and all 6 of his medications. I know that it is part of life and something that has to be done, but it upsets me everynight. It seems as though it is the pivot point of my days. I wake up, go to work, make dinner, GTUBE TIME, bed, wake up...
    It will get better. I'm glad to see Annabelle is doing so great in her therapies! Are you bringing her to the conference with you, I would love to meet your angel!

    June 12, 2011 7:38 AM

    Nicole, we went through the granulation tissue issue with Evan too, although they used silver nitrate the first time and the steroid cream and that worked. I know at times it can be frustrating. My woe is me time comes in the evening preparing the feeds and all 6 of his medications. I know that it is part of life and something that has to be done, but it upsets me everynight. It seems as though it is the pivot point of my days. I wake up, go to work, make dinner, GTUBE TIME, bed, wake up...
    It will get better. I'm glad to see Annabelle is doing so great in her therapies! Are you bringing her to the conference with you, I would love to meet your angel!

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  2. I'm so sorry that the g-tube is causing so many issues but I'm so glad to here that Annabelle is taking it all in stride and is developing so well. Whenever I feel beat down I look to Caleb to see how he is feeling, and he is happy, so I try to focus on how he is feeling, not how I am feeling. That's not always easy to do but it sounds like you are finding great joy in Annabelle's progress even with all the not so fun stuff.

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  3. Oh, I'm so happy she's doing so well. But girl, YOU have been through the ringer! I am sure this last year (or 2.5 years) have been absolutely traumatizing for you. You are doing great. You are very brave to do whatever she needs, and it looks like she couldn't be happier, which means you're doing your job. That picture of her in the pool is amazing!!!
    Colleen

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  4. Nicole - I know I told you before, but if you DIDN'T have a breakdown sometimes, I would be worried. =) You are human, amazing, and doing wonderful with everything you do. I CANNOT get over that she is not 20lb!!! Soooo great! xoxo

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  5. Okay, I was thinking Enough is Enough, so if I'm thinking it, than you surely must be thinking it! I'm sorry it is just one more thing to deal with, but like you said, in the grand scheme of things it is worth it and it is small I guess :-/
    I can't believe how well she walks at those bars, and she's TALKING so well to! :)

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  6. Hugs, friend. Thank goodness for your mom-intuition with pushing the granulation tissue concerns. It's wonderful to see that Annabelle is at 20 lbs already! And those parallel bars are a great idea - it seems you have a great therapy team and facility.

    You will persevere through these trials...but I'm sure you already know that, each time you see Annabelle :)

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  7. I continue to be amazed every time I read about your Annabelle. She works so hard and you keep her so motivated. I love the videos too! You are quite an inspiration!

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  8. Great job pushing forward momma! I know that there are days I want to throw my hands up in the air and scream ENOUGH... but somehow Gd gives us the strength to keep going for our angels.... and her smile is proof that you are doing GREAT!!!

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  9. ENOUGH!!! I'll yell it for you. It never ceases to amaze me that we get so worn out with it all far sooner than they do. I'm sending big huge hugs. Remember, you don't always have to be strong. It's okay to admit this sucks sometimes. SHE however is a total ROCKSTAR!! Holy cow, she looks so grown up in that first picture! So happy to hear all the wonderful things she's doing!
    Jill

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  10. I have felt the same way about the hospital. I totally relate! It never lasts, though. At some point things really do slow down and life goes back to normal. Thanks for sharing. You are so great at explaining everything. Your posts will definitely help others now and in the future! The "cheese" picture of Annabelle is priceless!

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